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Posts tagged ‘CRPS’

As a child, I loved watching snow globes. There was something very peaceful in them to me. I always spent my time focusing on the scenery inside. My favorite globe was from NYC. The Empire State Building and Statue of Liberty along with the streets of the city. It even had tiny people on the inside, shopping. I would marvel at the size of the not to scale, or even geographically incorrect, city was. I loved it. Then, I would shake as hard as I could to watch the fake snow crystals fall to the ground. I would look to see if the people somehow magically moved. Or if the Statue of Liberty put down that heavy torch. But, it always remained the same. Constant and unwavering.
For today, this is my inspiration. As my world gets shaken, I get to decide to remain constant and unwavering. Somehow, I find this image very comforting. So, sitting here in the parking lot for my PT appointment, I’m going to dedicate this day to be my snow day, even if it is only September.

It also makes me want to go to NYC again. I broke my globe and need a new one!

I’m a very musical person. There is something very calming and soothing to me. It can bring me to a place of clarity that I can’t reach with people or words.

One of my favorite songs is Landslide by Stevie Nicks. I’ve been obsessing on it recently. As a matter of fact, I’m listening to it right now as I write. For those of you who don’t know, it’s about changing and growing. As I child, I felt like it represented growing up. Then, as a young adult, it made me think of letting go of your youth and becoming an independent adult. Now, it gets me to thinking about the changes that are going on in my life. I’ve always been one to embrace change. Embrace might not be the right word. I cannon ball through changes. I thrive in change. This is likely the first change in my life that I haven’t embraced. Change is a necessary evil. You must change in order to evolve. Living with RSD has forced me to change in a direction that I’ve been fighting. I’ve been so uncomfortable for the past few months because I realize that change isn’t something that I enjoy right now. I don’t know that I’ll get to enjoying this change, but I think that I can learn to embrace it a bit more. Like the song says, “I’ve been afraid of changing..”

May be it’s time to jump in. If I can’t cannon ball, may be I can dip my toes in and get my feet wet.

I’ve had this neurostimulator implant for two and half years now. For those of you that don’t understand how they work, I’ll do my best to explain. I have RSD, which gives me wrenching pain in all four of my limbs. It also gives extreme temperature changes and swelling to the joints. I loose my perception of where my limb is in space, which matters more for your feet. It’s not constant, but I can’t control when it comes and goes. Stress makes it worse and exercise makes it better. The neurostimulator does not stop the disease. It blocks my perception of the pain, or stops the pain. My hands still turn blue and purple, but I can’t feel it as much. Every once and a while, I’ll turn off the neurostimulators to see if I still need them. Doesn’t take me too long to realize that the answer is yes. I couldn’t function without them.

This got me to thinking if only there was a device like this to stop the pain to you soul. You could just turn on a switch and let the pain happen around you. The pain happens, but you just don’t take it so much to heart. This got me to thinking even more. The reality is that we do have the power within yourself to slow down your perception of pain. Somehow, thinking of dealing with my struggles this way was helpful.

I’ve always been a closet optimist. My mother has always been the chronic optimist. I never wanted to be like that. I wanted to be a realist…dealing with life’s bumps and turns as they come. Secretly, I would actually blindly and naively believe that things will work out for the best. Pollyanna on the inside trying to pretend that I was Judge Judy.

Lately, I’ve been feeling a little bit down, overwhelmed and flat out wrong. I think that I have finally cured by optimist streak. I can’t say that I believe things will work out any more. I don’t believe in the happy ending, or the bright side. I am glad that my kids don’t have RSD, but I can’t guarantee that they won’t get it. I find myself changing and growing in directions that I never saw coming. I’m tired and I just can’t sleep long enough.

When the RSD made my hands cold, I bought gloves. I have socks and leg warmers to help with my cold feet. In a way, it feels like it’s made soul cold, but I have nothing to warm it. I’ve been trying to connect to my spiritual side, but it’s not always easy. I am finding an envious person looking in the mirror where there didn’t use to be. I have never envied money or things and that hasn’t changed. But I do envy health and the ease of life for others.

I suppose that the grass might be greener. May be my optimism hasn’t been cured after all.

Please don’t pity me. I went to the doctor’s yesterday. The appointment didn’t go as well as I would have liked. I thought that I could be done with doctors for some time. No such luck. I need a CT scan for my foot, a trip to the physiatrist and even more rehab. My back is in spasm, my CRPS is still not being managed well and my ankle and foot that was broken 9 months ago is not healing. I’m not happy with any of these things, but please don’t look at me with pity. In addition to the doctor, I saw my device rep for reprogramming. Gone are days of quick appointments. I was in the doctors for 90 minutes, but please don’t pity me. I watched the man who programmed me. He was very kind and helpful, but he looked at me with pity. He saw me as an individual with RSD. Not an individual. I fight to remember who I am through all of this. I want to be a role model for my kids. I want them to see me and forget that I’m not normal. I don’t want them to know all of the things that I can’t do. My life is hard enough. So, please don’t pity me. I can’t get dressed up because it hurts. I’ve had to cut my hair, put all of my cute shoes in the closet, give up running, buy a new car. I can’t cook a nice meal. But, please don’t pity me.
And here’s why. I know that I have RSD. I fight it every second of every day. I don’t need to see it in your face. I struggle with my loss. I know that it’s not fair. I know that my prognosis is not good, but I don’t need to see that in your face. Don’t pity me. If you pity me, I realize that it’s a lost cause. When you pity me, I don’t feel like myself. I feel like I am just an individual with RSD. But, I am so much more. So…please don’t look at me with pity. Look at me as someone on my team. Look at me like you’re going to make things better, even if you can’t. Look at me like there is something worth fighting for and that I’m not at the end of my rope, the end of my treatment. Look at me with compassion not with pity.

So, I survived my first day back at the gym, Zumba. It was nice to see the girls, but something sad about my limitations. I didn’t know the routines and felt frustrated by what I couldn’t do. I realized that it wasn’t apparent to everyone else that I was struggling. That was almost worse. It is a double-edged sword. On the one hand, I don’t want people to know that I have a disorder, on the other hand, it’s hard to be judged when people don’t know your limitations. I kept telling myself that it’s in my head. People don’t come to the gym to judge me. I’m having a hard time letting go of running, but I guess that is for another day. For today, I need to celebrate surviving my first day back at the gym.

I don’t remember the shoes that I was wearing when I had the car accident, which is funny for me. I’ve always been about the shoes. Growing up, I never did try on my mother’s shoes. I wanted to tell my own story. When I got married, I had beautiful white Kenneth Cole Mary janes with a sturdy heel since I would be on my feet. For all three of my surgeries, I wore my brown knit Uggs. My comfort shoes. When I broke my foot, I had cute Italian brown leather wedge sandals from J Crew. I was traveling in Santa Monica for business. Some people build their outfits around items of clothing. I build them around my shoes. I have RSD, or Complex Regional Pain Syndrome, in all four of my limbs. To manage the pain, I have two Spinal Neural Stimulators that have been implanted in a series of three surgeries. I take daily doses of nerve medication and supplements to manage pain. At this time, I also have PT twice a week. My team of doctors include a pain management specialist, my general practitioner, a neurosurgeon, an orthopedic and the team of physical therapists that torture me on a weekly basis. I could dwell on the inequity of life, how bad things happen to good people, etc. Really, I think mostly about the shoes. I am reminded of the poem, Welcome to Holland
Sometimes, life isn’t what we thought it was going to be, but that doesn’t make it bad.
So, my journey begins now. How to deal with the ever after. There are two pairs of shoes that I miss the most. My prized black patent leather Manolo Blahnik Mary Janes and the running shoes that I wore for my first marathon. I don’t know if I’ll ever get back into those shoes, but I have hope. May be it won’t be those. May be there are new prizes ahead of me. I hear that Holland has those cute wooden flats.